Saturday, November 27, 2010

So my little champ survived the power outage and I couldn't be more proud of her. Kyle and I have enjoyed the holiday weekend and hope you have too! We got the pictures from Nicole Grimes that she took at the birthday party so I wanted to share them with you!

The party was held at our church in the auditorium. Trinity has been amazing through everything and this was just one more way our church stepped up to help us out! We put a couch on stage so Skylar could lay on it and be comfy with the ability to look out and see everything.

My friend helped me with signs and banners even though she was sick and missed the party - she left everything on my front porch so she wouldn't even come in contact with us.Thanks Lindsey!

Here are some postcards I designed with pictures of Skylar and a thank you message on the back that a dear friend printed up for me. The large poster is from the SMA event at the hospital that I just re-used :)

This is a close up of the top of her awesome cake/cup cake tower.

Skylar smiling - this was a rare event at her party because she slept most of the time. What a party pooper, lol. When she did wake up, I think she was a little overwhelmed, but it was still fun!

The Jones Family!(compliments of my step dad's iPhone :)

These are two very special kiddos dear to my heart! They have both lost siblings to SMA and it was so awesome for them to meet and play together since they are almost the same age. They are two very smart kids and so adorable too! I wish I could have spent more time with them, but hopefully I will get to hang out with them again soon!

These are some of my best buddies from Clemson. One friend drove all the way from NC! She came to my "after baby shower" to meet Skylar when she was only a month and a half old (right before we were diagnosed) so it was cool for her to see Skylar again! This is also the debut of my new bangs and hair color - thank you Ryan at Michael Burton Colors Salon!!!

Hope you enjoyed the pictures - thank you Nicole for staying behind the camera for us :)

I know you are all probably spoiled now with three blog posts over the holiday weekend, but I can't promise another one any time soon, lol. I am working on some design projects and photo editing so that will be my focus for the next week or so. Stay warm!!!Peace.

Friday, November 26, 2010

So today we had our first "emergency" situation... The power randomly went out and it was one of the worst case scenarios - Skylar was on bi-pap. Some of you may not understand how this could be a "worst case" but let me try to explain...

Skylar's bi-pap is a machine that adds pressure to her breaths so she can fully expand her lungs and get the air that she needs. There is no oxygen added - just room air - but it does have a back up rate in case she were to quit breathing like a ventilator. It is non-invasive so she wears a little triangle mask over her nose only (it doesn't cover her mouth at all). There are pictures of it in the last two blog posts I think... The bi-pap allows her body to take a break since she's not breathing so hard to get the oxygen she needs - her heart rate is typically lower, which is good, and she gets great sleep too. We also get great sleep because we know she is resting well and doesn't need constant suctioning since a lot of the mucous is pushed out her mouth from the high pressure. Some mucous, however, can get into her lungs - which is why we do a cough assist treatment every time we take her off bi-pap. The absolute worst case scenario would be that the power would be out first thing in the morning because she has sooooooo much mucous built up from the night and it gets really thick - it would definitely require the cough assist to clear her airways.

So hopefully that helps you understand some. Skylar was on her bi-pap for a nap and I was on SMAspace replying to some discussions about mucous plugs and calling 911. I realized I told Natalie that we're the first people to call in an emergency if no one else is around (not that I plan on leaving her alone, but just in case...) and not to call 911 before she talks to us. So after answering some discussions, I went back to correct myself with Natalie. I told her that if the power were to go out and she was alone, that would be the only case in which she would call 911 first before us. I told her that we have been meaning to get the right cables to hook up the battery and inverter in the van, but wanted to make sure the van could handle the power drain and it wasn't going to hurt anything since it's not technically our van... needless to say, we still need to get the cables. We haven't gotten a generator because the van would serve as the back-up power, but not so much anymore. She asked me what we would do and I told her we would pack up the bi-pap and suction machine and hang out in the van as long as we could. We don't have any external power ready yet for the cough assist (it requires a pure sine wave - I can't explain it so I'm not going to try). We have a small inverter that you would typically use for a laptop - or something like that - which we use for the bi-pap and then the suction machine has a cigarette adapter made for it. I then told her word for word, "Knock on wood, our neighbor told us they've only had 2 power outages in the 10 years that they've lived here so hopefully we will never have to experience that."

Not five minutes later, Skylar woke up from her nap at 3:20 this afternoon. I was in the kitchen cleaning my plate and I heard this horrible beeping sound. My first thought was "that sounds like the low battery beep on her feeding machine, but it's slightly different and I know the feeding pump is plugged in." Then I thought, "please let that be nurse Natalie's phone or some alarm of hers..." So I ran back to the nursery and I went to the feeding pump, but the beeping was coming from the other side of the room. Oh Lord. That's the alarm on the bi-pap to let me know that the power is out and it's no longer working. I frantically looked at her feeding pump and saw that it was running on battery. I looked over to the pulse-ox machine - it too is on battery power. My first instinct was to take her mask off and run a cough assist to clear her airways... oh wait, the cough assist doesn't work!!! PANIC!

With her mask on and no air coming in, she can't breathe and is probably panicked herself. I pulled her mask off, ran to the front of the house to get her portable suction machine and ran back to her room and suctioned her out. I cleared as much as I could out of her nose and throat (since the bi-pap creates thick secretions and boogers) but didn't want to use too much power because the battery life is pretty short on the suction machine. I knew that I needed to get her to the van if the power stayed out. I called all our neighbors to find out if it's just our house or area-wide. No one answered. Of course, it's the day after Thanksgiving... I finally got on the phone with GA Power and found out it's an area-wide outage and there is a crew working to fix it. After getting off the phone, I heard sirens and more sirens so I guessed it was an accident that knocked out the power. They told me it wouldn't be more than an hour. Could we make it that long?!

I was running around like a chicken with my head cut off. I ran and got the stroller, picked Skylar up without even thinking about all of her cords attached to her and put her in her seat. Meanwhile, Natalie was trying to unhook her feeding pump tube, grab her pulse-ox machine (attached to her big toe and was pulling across the room) and get her bi-pap machine to the van. Natalie was a rock star. We were out the door in a few minutes - Skylar was stable for the first minute, but then was looking a little pale as she was needing a cough assist. The area around her mouth always turns blue first and definitely changed colors fast. Like a crazy woman, I threw a blanket on her and wheeled her out of the house. Natalie helped me get her stroller down the step out our back door and then helped me lift her into the van in her stroller. THANK GOD FOR NURSE NATALIE!!! I would've probably been a nervous wreck if she weren't there to help me get everything together. Kyle wasn't even close to home and I could not have been able to carry everything in addition to caring for Skylar!

As soon as we got in the van, got her bi-pap back on, Skylar was fine. In fact, she looked at me like, "Why the heck are we just sitting in our driveway? Shouldn't we be going somewhere? This is boring..." It was pretty funny. Natalie went back in to finish cleaning for the day since it was right before she was supposed to leave and then brought the iPad back out for Skylar. We watched/read a few stories to pass the time. I called Kyle's parents to see if they would come down in case Natalie had to leave and I was stuck in the van, lol. Seriously though, I can't lift her stroller by myself so they headed down. Our power came back on (GA Power called me when it was restored) and I think from power out to power back on was a full hour. As Mom & Dad Jones arrived they said they saw the emergency vehicles on the corner of our neighborhood, which would explain it.

I think this whole thing caught me so off guard because there was no storm, no ice, no fallen trees... nothing that would normally happen to knock power out. In the fall, we had some really wicked storms and I told Kyle then that we needed to get a generator. When a storm would come, I would have a plan and was almost expecting it. This was out of the blue and shocking really - especially since I had gone over everything just minutes before with Natalie. It's her second day in our household and I am pretty sure she thinks I am a crazy lady now, hahaha. I can't help but think that God had something to do with the timing of it all though :)

Well I just had to share this crazy day with you - if for no other reason than to document it for myself to look back on and laugh about. Needless to say we'll be buying a generator. Thanks for reading. My next post will contain birthday pictures... promise!

Thursday, November 25, 2010

HAPPY THANKSGIVING!I hope you all are enjoying good food with family and/or friends and have a holiday season full of love and laughter!

I am super thankful our little girl is still around to celebrate and that I have a loving husband to go through this with as we grow together. We are so grateful for all of the support we have - an amazing family and network of friends! Thanks!!!

Sorry for the delay with this post - I was trying to get pictures together and had a few other set backs, but here is the birthday update :)

On Skylar's Birthday, which was Friday, November 19th, I was so excited that we were able to celebrate together! Skylar woke up in a good mood, full of smiles (I think she knew it was her birthday :) and I was full of joy. I got to see my little girl turn 1!!!

Skylar had a great day! Our CNA came to help me bathe her, we watched all of her favorite movies and she had a really good nap. We were going to take family portraits, but our photographer had to cancel because she was feeling a little under the weather and we didn't want to risk it. Hopefully we can reschedule soon. I think I felt every emotion possible - anger (thank you Reese), excitement, disappointment (people having to cancel coming to the party because of illness), thankfulness (people not coming to spread their germs to us), love, joy, peace, anxious/worry (party and germ exposure) and sadness/suffering...

When Skylar was napping, I decided to get online and check facebook only to be shocked with the news that a 2-year old little boy named Jonas with SMA type 1 had passed away the night before. He had been fighting with a cold for a week and wasn't doing well, but I just didn't expect to see that news. Please keep the Coleman family in your prayers as they grieve the loss of their son and continue to raise their new baby girl who also has SMA type 1. I was so mixed with emotions - extreme sadness for this family and a reality check for us, but I still wanted to be happy to celebrate Skylar's birthday. I had a good cry and then decided not to think about it much more so I could be happy for Skylar.

I was telling a few people that to live "normally" and function daily, I almost have to live in denial that my daughter is going to die soon. If I focused on that, I would be depressed and a constant mess. I have to force myself to let that go, knowing I will have plenty of time to go there when she's gone. I choose to celebrate every day with her while she's here. So when I hear about another SMA child passing away, it's a harsh reality check and sends me into the grieving process, not only for that family's loss, but knowing that will be me someday as well.

Anyway, I was able to get through it because my wonderful husband went out and bought lots of goodies including stuff to make a cake and was in the kitchen baking when I learned about Jonas. He came and gave me a hug and then I joined him in the kitchen to continue with the birthday celebrations. Once her cake was done, we took it into her room to show her. We want to recognize all of our friends who make awesome cakes - it's a lot harder than it looks, but Daddy did a good job!

I gave Skylar got a nice gum massage to help those teeth break through and we hung out as a family just enjoying the evening. I stayed up until the wee hours of the morning to put together a video of Skylar over the past year, but every program I tried to use had different issues and I decided to go to bed frustrated and grumpy with nothing to show. Oh well - hopefully I can get something together for the blog soon.

Saturday was a big day. We got up super early (Kyle woke me up much earlier than my alarm was set for) but it backfired on him because then I took my sweet time thinking I had extra time to spare, lol. So we were running late as usual and ended up running out the door to go to the party without my camera! Luckily, a few people brought cameras and are going to send me pictures so stay tuned for actual party pics. We arrived right at 11:30 and it was everything I imagined in my head! I had given my moms all the responsibilities and they did a great job!!! My stepmom was in charge of the cake/cupcake tower which was complete with little white orchids and butterflies, and my mom & mom-in-law did the balloons and decorations - AMAZING! Thanks moms - couldn't have done it without you!

Many people at the party were surprised how long and "big" she's gotten so I wanted to post a full length picture for you to see since I realized I typically do close ups of her face. Here's her special birthday dress I had so much fun buying for her :)

We were sad a lot of people canceled last minute due to not feeling well or kids being sick, but we were grateful that the germs stayed home and Skylar seems to be feeling just fine :) A lot of people did make it to the party, including the doctor that delivered Skylar!!! It was so neat to have people from all walks of our lives come out and celebrate Skylar - high school and college friends, SMA buddies, church friends, medical professionals, family friends, etc. Thank you for supporting us and for coming out to celebrate! Even though Skylar was a party pooper and slept through most of her party, I think she enjoyed the change of scenery! She has already enjoyed a lot of her gifts too :) I did not expect so many gifts since we did a potluck, but we got a ton of fun books, puppets, toys, clothes, gift cards and more! THANK YOU!!! Even the wrapping/packaging was amazing! Here are all the cute bags we received -

We were all worn out and Sunday we slept in and had a fabulous day of rest. We brought all of the balloons from the party home and I let them go in her room so they filled the ceiling. The next day, the latex balloons had already fallen to the floor, but the fun shaped balloons are still going strong - Check it out!

We also got to interview a nurse who is now going to be helping me. Tuesday we filled out all of the paperwork for our in-home nursing and it's complete! We have a nurse coming to help me 3 days a week now from 8-4 :) YAY! Tuesday was our first day and it was awesome!!! She cleans out the equipment before she leaves and is around all day to help me bathe her, move her, watch her while I go to the bathroom or take the dog out, etc. This is going to be a huge help, I can tell already! I don't typically ask for specific prayer requests on the blog, but here's one if you're up for it. Our nurse, Natalie, is super qualified medically and is really nice so we hope to keep her around, but she has 4 kids at home (ages 2-12) which is a huge potential to carry illness. Can you please pray that her family stays well and that she would not bring any germs into our house?

More pictures to come!!! Stay tuned for her Thanksgiving dress and birthday party pics!

Wednesday, November 17, 2010

Well, I thought I would update you before things get too busy around here and I write another short novel :) A few big things have been going on and it seems as if things are finally coming together... (apologize in advance for any run-on sentences! I am a long-winded person and tend to write that way too according to my husband :)

First: WE HAVE MEDICAID!!! Finally. I almost had a nervous breakdown a few days ago because when I opened the envelope with the letters and her medicaid card, the only eligible dates listed were Oct. 1, 2010 through Oct. 31, 2010. That's right - one month and it is already mid November so what the heck?! I thought, surely, this must be a joke. After talking with a social worker, I was told sometimes medicaid will only give you coverage on a month to month basis. I thought I was going to laugh, cry and hit something all at the same time. I made several phone calls to workers who were conveniently not available to answer my phone calls and also had mailboxes that were full... how nice. We finally got in touch with the supervisor I had talked to several months ago and he assured us that Skylar was covered for a full year. This will hopefully save us from needing to do another fundraiser for our family. It was a nightmare to get medicaid, but I am hoping it will be worth it!

Second: We are waiting on her stroller to come back and should have it today... I still don't have the power supply (battery and inverter) for the stroller, but that's just a matter of figuring out what will work best with our setup and finding it online to buy. Our social worker at hospice is already working with the aquarium to see if we can get out for a special outing with Skylar once we get everything ready and do a test-run at a park or something to give us confidence in going public. It will be an amazing day when Kyle and Skylar and I can get out as a family for fun. The last time we were all out together was when she was a couple months old and was still in her little car bed...

Third: Skylar is about to turn ONE! It is almost unreal for me to think we're going to have a birthday party and she's going to be there to celebrate with us! Doctors never gave us a life expectancy for her, but we saw the statistics online about most SMA babies not making it to their 1st birthday... and if they did, only 20% see their 2nd birthday or something like that. Also, the earlier diagnosed, the more severe so that wasn't looking so good for us either. Right away, I prayed that we would beat the odds and see her 1st birthday. I knew she would be a fighter like her mommy and a survivor like her daddy. The one year birthday was a great milestone to hold onto for hope - a milestone she could actually reach. I am so thankful for a full year with her. It's been such a blessing to see her grow and mature out of the baby stage. Even though she can't move much, let alone crawl or walk, she seems to be more of a "big girl" with her facial expressions, growing length-wise, hair finally growing on her head, but I am still waiting on those teeth to poke through.

It's crazy to think that it has been a year. One year. So much has happened. Sometimes it seems like just yesterday that I brought Skylar home and other times it feels like years have gone by... and every now and then I have to remind myself that this is in fact my life - it's not a dream. It's a tough reality, but one we are able to go through with the support of our friends and family (including our church). We are looking forward to celebrating with everyone this weekend :) I know I said this in my last post, but if you want to come and didn't get an evite, please let me know - I sent it out using email addresses and am afraid I may have left people out without meaning to. If you're someone who was left out, please forgive me and email me so you're not left out anymore!

So I think those are the major updates. Oh yeah... we're still working on the in-home nursing help for me - will update you when that becomes a reality (we're waiting to interview nurses). On a somewhat related note, we were able to get a different approved nursing company to come and give Skylar her RSV shots in-home on a monthly basis so we don't have to go to the doctor's office every month! This is such a huge relief on many levels. When January rolls around and we have to pay out our large deductible, Medicaid should be able to cover the in-home shots which will save us thousands of dollars a month. Not exaggerating. The vaccine is super expensive, which is why most kids don't get it. It's so nice that we can get it in home where it's nice and warm and germ-free for the most part :)

Skylar has been pretty stable the past week. She's had a few episodes where she dropped her O2 levels down into the 60s (I think it was just a bad mucous plug blocking her airway or she aspirated on her saliva and choked pretty badly) but I think she'll be okay. My mom has been a HUGE help this past week and has been over all last week to help me and kyle - from painting and cleaning to bringing food and playing with Skylar... THANKS MOM! Uncle Matt came into town this past weekend too all the way from Maine and it was so fun to see him!!! I know Skylar enjoyed watching Surf's Up with him :)

I am pretty sure she's excited for her party. Skylar will certainly enjoy the change of scenery! She gets a little scared with a lot of people around, so we'll have her away from the crowd where people can visit a few at a time. All the moms (my mom, stepmom and mom-in-law) will be helping set up and decorate for Skylar's party and I am so excited - thanks for your help!!!

Here is Skylar checking out her first birthday gift from Great Aunt Vickie and Uncle Steve in Indiana - I think she liked the shiny paper, hahaha - her eyes are huge :) I helped her open it and we've already enjoyed some of the fun movies inside!

Thursday, November 4, 2010

Lots of celebrations going on this month - Kyle and I celebrated three years of marriage yesterday, Skylar is going to have her first year birthday party in 2 weeks, and then Thanksgiving! I love the fall and holidays :) I'll also be speaking at the SMA conference at Children's Hospital next week which is really exciting too!

I just noticed too that I really slacked off last month - one blog post! I'll try to be better :)

So many of you have asked to see Skylar in her Halloween costume... but I am sad to say that there is no costume! I had a dentist appointment the first week of October and I thought, "Hm... since I am out of the house, I'll swing by Target and Babies R Us to see if I can find a cute outfit/costume for Skylar!" I was shocked to find that the stores were completely picked over on all of their costumes and everything Halloween was marked down 50-75% off... Seriously?! Here I thought I was right on track with the shopping crowds, but I've been told that costumes have been out since July and August. Geez! I need to get out more, lol. So the day of Halloween, I went to Target to buy candy for the neighborhood kiddos and they're already taking down all of the Halloween stuff and replacing it with Christmas stuff - what in the world happened to Thanksgiving?! I personally would like to enjoy my holidays and certainly not skip any! Okay, I'll get off my soap box... and possibly have a cute outfit to show off for Thanksgiving and Christmas :) Until then, this little onesie of "My 1st Halloween" will have to do! She wasn't in the best of moods... She was probably upset that she didn't have a cool costume, lol.

Skylar is staying pretty stable these days, but the teething is creating a lot of secretions so I am suctioning much more frequently and hope that she doesn't choke or aspirate in the mean time. I am sure it sucks for her too because she can't chew on anything and tylenol is her only relief besides the gum massage I give her every now and then. I can't wait for those little teeth to poke through - I even had a dream about it! I am sure that's all she wants for Christmas!!!

We got the second half of her flu shot and her first RSV vaccine shot today. This is critical for SMA babies because RSV (Respiratory Syncytial Virus) can be extremely deadly even though in healthy people, you would just have cold-like symptoms. RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections typically begin in the fall and run into the spring so we're hoping the shots that we have to get monthly will prevent Skylar from getting this!

The shots are insanely expensive, but luckily we were approved by insurance to get it and they should cover the rest for this year. What stinks is that it is not something that can be done in-home unless you have a certain nursing group (which we don't have) and therefore we have to go to the pulmonologist office where all the sick kids go... Hopefully we didn't pick up any germs there - I called ahead of time to request special care and they were awesome about cleaning the room and taking us in the side door to bypass the waiting area. We'll be going there from now on since the "tech clinic" where we've been going has been less than impressive. We of course hope that Skylar will continue to be healthy (as well as Kyle and I too). We've been sooooo blessed thus far with our health and pray it continues.

So Hospice Atlanta has been making some pretty huge advancements towards getting us in-home nursing in addition to having the hospice help. I got a phone call saying insurance is going to cover one month for now so that I can have an in-home nurse a couple days a week and then re-evaluate (hoping that medicaid will have been approved by then). We're going to have to re-interview nurses and work out the times and scheduling and such, but we're hoping to start that in two weeks! This will be awesome because not only will I have an extra set of hands most of the day, but there will be someone else qualified and familiar with our routine in case something should happen to me or Kyle and we need an extra set of hands!

Another awesome announcement - we're sending out her stroller this weekend to get a makeover thanks to your super generous donations! It's pretty much like "Pimp My Ride" for handicapped strollers, lol. Right now, her stroller is awesome for moving her around, but none of her equipment will fit on it and it's just not easy to get her out without the cough assist, suction machine, and now bi-pap as a back up emergency. We'll be ordering a more portable power supply (battery and inverter) and her stroller will come back with pneumatic wheels (to handle the large increase in weight) and a huge steel tray on the bottom that can hold all of her equipment instead of a small mesh basket. Once we have this, I will be able to take Skylar on a walk in the neighborhood on a nice day and maybe even take her out somewhere. I'll keep you posted on our possible adventures, but we're looking into the zoo and the aquarium if a small outing like a walk in the park is a success.

Her first adventure in her new ride will be our trip out for her birthday party on the afternoon of the 20th!!! I am so excited and can't wait to celebrate with all of our friends and family and everyone who is supporting us. If you're interested in coming, let me know and I'll send you the details :) Nothing too fancy, just hanging out with good food and good friends!

Side note: Just in case any of you were wondering, our mouse friend has disappeared and the exterminators came to re-seal the outside of our house (apparently there was a whole brick missing in our crawl space) so hopefully we won't have any more surprise visitors!

A lot of people have been asking me what to get Skylar for her birthday - please don't feel like you have to get her anything! If you want to get something though, here are some hints to help :) She's not an off-the-shelf kinda gal, hahahaha.

That's really about it. Here are some pictures below from when Annie's mom came to visit for your enjoyment.

About Me

I love life. Even when it's not always great, it's better than not having it.

I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.